Melissa Cote’s daughter, Zoey

How Twenty One Pilots Helped Me Understand My Daughter's Stim

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My daughter, Zoey, is 4 years old, autistic and is considered nonverbal.

She can’t tell me her wants or needs or if she’s hurt or sick, and as her mom, I want and need to know these things. Through intense early intervention therapies, Zoey has come such a long way, and it has been one hell of a ride.

I found I could communicate with her through music, and soon my nonverbal daughter started singing — not talking — singing. 

There’s a song for just about every scenario in our house. If she says no, then you will hear her sing, “No more monkeys jumping on the bed …” Yep, that’s her rendition of the word “no.”

“Twinkle, Twinkle, Little Star” was her first song, and it’s her go-to song if she’s angry or needs to escape from an over-stimulating situation or just from the world. 

I watch this gorgeous child stand while putting her hand up in the air as she stares into her palm like she’s seeing magic in her hands that no one else can see. And yeah, I wish I could see it! I watch her when this happens, and I’m jealous — like really jealous. This one particular stim is amazing. 

She has many stims like rocking and banging her head when she’s trying to soothe herself. And she’s a sensory seeker, so she has to touch and feel everything. Sand and water are her absolute faves!

But this one stim is beautiful, and when she does it, I can’t help but ask her every single time, “Zoey what do you see, my love? Is it beautiful? You make it seem so amazingly beautiful.”

Oh, how I wish I could see what she sees.

I’m jealous.

She does this stim all throughout her day with a huge smile on her face, so I know that it’s angelic whatever it is that she sees — it’s heavenly to her. Seriously, who wouldn’t want to see that? I tried to figure it out for two years, and I never could until recently with the help of her new favorite song.

Zoey and I jam out to music all day and night. Zoey is fast-paced, and she’s not the kind of kid to sit in front of the TV. In fact, when it’s on, she actually shuts it off herself. I love all kinds of music and so does Zoey. 

She likes “See You Again” by Carrie Underwood, “My Wish” by Rascal Flatts, Beethoven’s “Moonlight” Sonata and Michael Bublé’s song “Lost.” She also loves Imagine Dragons and digs Elvis, too. So I am never surprised when a particular song touches her. She’s had so many different types of therapies, but nothing has done for her what music has done for her. 

Zoey communicates through music, and it’s awesome. I love it because I love music, too. It’s our connection.

Recently, I have been listening to a new band, and she digs them a lot. She comes running from her room when I start playing the Twenty One Pilots song “Ride.” And it’s not a little jog. I’m talking about a full-on sprint because she doesn’t want to miss the song. That’s how the Beastie Boys were for me at her age, so I know how much she likes this band. 

I had their video on our TV via YouTube, and she actually sat and watched it. Seriously, this kid doesn’t do TV, so I was shocked she didn’t try to move or shut it off. She heard her song, and she was watching them sing it on our TV

A very cool moment.

I had never seen this video, so I was into it, too. Then I saw her stim. The video was dark and then went to a bright light — darkness to light. Zoey stood up and put her hand up in the air. She had a huge smile on her face as she gazed at her palm, and then she closed her eyes — still smiling. She began to twirl and spin right where she stood. She was dancing, in her own way, to her own beat as the music played.

I finally understood.

I get it.

I’ve been thinking too much about it.

It’s really just as simple as this — it’s her pure joy and love for something.

Whenever things seem to go dark, she can find a way to see through to the light. And to me, she is pure light! 

Her world is music. She’s the lead singer. She wants to dance to her own beat to her favorite song. Yes, it’s a beautiful thing to see her in her world, and I’m taking my time here and so glad she let me in on her ride.

Follow this journey on Melissa’s Facebook page.

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To the Mom Who's Scared of an Autism Diagnosis for Your Child

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Dear mom who’s scared of an autism diagnosis for your child,

I get it. I’ve been there, too.

I told myself he would “grow out of it.” He didn’t.  My friends told me it was “just a boy thing.” But it wasn’t. I chalked up our challenges to his prematurity, to the fact that he is a twin.

I get it. An autism diagnosis can feel scary at first. You’re worried about what people will think of him. You’re worried about labels and stigmas, and the fact that what you know about autism at this point doesn’t match what you know about your child.

Your child is special, amazing, unique. But he also faces challenges that can be confusing and sometimes exhausting to you. It can be hard to chase, coax, soothe, please and defend when you walk out the door, enter a store, introduce a new food or visit a relative’s house.

Dear, dear mama — hear me now.

You are a good mom.

You are a good mom because you are trying.

You are a good mom because you are worrying and wondering.

You are a good mom because you are seeking answers, even if the answers might scare you at first.

I was scared, too, so for a long time, I ignored it; I hoped he would “grow out of it.” I forced myself to be “better” so he would be “better,” too. But things only got more confusing because I couldn’t explain away his behavior anymore, not to my family, or to friends, or to myself.

So I took the leap and sought professional help for the answer. And it came: autism.

It crushed me and put me back together all at the same time. It suddenly all made sense; all the pieces that were simultaneously foreign and familiar.

They fit.

I finally had a name for everything we had been experiencing for eight years.

And you know what? My son — my beautiful, funny, loving, quirky son — didn’t change because we got the diagnosis. He was autistic all along. We just didn’t have the words to explain our reality.

But when we did, when we knew the word and accepted the word and said the word — autism — things changed.

It was the key to open the doors we needed to get help for our son, and for us too. Autism opened the doors to therapy, to counseling, to school support. But even more than that, it opened the doors to understanding, to compassion, to greater patience, to better parenting.

It helped me accept my son… and myself.

I wasn’t a bad parent. And neither are you. I was just scared. I know you are, too.

But here’s the truth: autism may not have been the path you would have chosen before, but if your child is autistic, you’re already on it.

Right now, you’re in the dark. But a diagnosis turns on the lights. It’s blinding for a little while, but then? You’ll be able to see.

You’ll be able see your child for who he really is, with all his gifts and challenges, his possibilities and potential.

You’ll see yourself more clearly too, more gracefully and tenderly.

And you’ll be able to see where you end and where others begin.

Seeking a diagnosis is a big step. It can feel huge and scary. The truth always is. But you can do it. You can take this step. Because you’re a good mom, and all good moms are brave.

Wishing you all the love, peace, and joy in the world, because you have so much good in store for you,
A mom of an autistic child

Image via Thinkstock Images

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Why I Love It's a Small World as Someone on the Autism Spectrum

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If you’re like me, every few years growing up, you’d spend a good amount of time at a Disney theme park with your family, friends, sweetheart or siblings. Maybe you enjoyed getting wet on Splash Mountain, singing “Yo-ho-ho a pirate’s life for me” on the Pirates of the Caribbean ride, watching singing parrots in the Enchanted Tiki Room or getting your picture taken with Mickey and Minnie. And maybe you either dragged someone (or got dragged by someone else) to be subjected to 15 minutes of riding in a slow-moving boat and watching a bunch of dolls in an abstract, colorful atmosphere singing the exact same song over and over again.

Yup, you guessed it. It’s a Small World.

Today, if you asked anybody over the age of 9 about that ride, a lot of them might admit to a fairly passionate hatred toward the classic Disney gem. Why do so many people dislike It’s a Small World? The most common reason I’ve found is the horribly catchy song that’s endlessly repeated and stays stuck in your head when the ride is over. Others say it’s the animatronic dolls. Some would even argue that, compared to other Disney rides like Pirates of the Caribbean and the Haunted Mansion, its architecture and feel is not nearly authentic enough.

The reasons why some people dislike this ride can go on and on. But the question I really want to answer is: why do I like It’s a Small World when many others don’t?

You probably wouldn’t expect a nearly 21-year old male to say he loves It’s a Small World, a ride that mainly appeals to young kids and their parents. And you probably wouldn’t expect to hear that I actually enjoy the song playing during the ride. For one, I understand the context behind the ride: Countries around the world are presented with representations of their people and cultures, and combined with the lyrics, the ride delivers a powerful message that all people and nations are equal. Everyone experiences love, hatred, disappointment, hopes, dreams and desires, but our differences can make us oblivious to that. I also like the ride because of the artistry and detail throughout. Sure, it doesn’t have Pirates’ ability to transport you to another time and place, or the Mansion’s highly detailed technicality through special effects, but it still has the vibrant, colorful artistry of Mary Blair that inspires the young and the young at heart.

But I think the most significant reason I never grew to despise this ride is because it’s one of those rides that accommodates my sensory issues. A trip to a theme park can be both a thrill and a nightmare for someone like me on the autism spectrum — lots of people everywhere, loud noises all around, waiting in long lines only so the ride can break down… It can really be tough for anyone sensitive to sound, touch or atmosphere. Growing up, I would avoid several rides, such as The Matterhorn Bobsleds, Space Mountain, Tower of Terror and even The Haunted Mansion because there were many fast, sudden changes or unsettling moments that would overwhelm my senses. I would always go on other rides, such as The Jungle Cruise, Pirates of the Caribbean, or Buzz Lightyear Astro Blasters, where I always knew what was about to happen. As for It’s a Small World, it not only felt like a safe haven for me, but the many creative scenes within the ride, along with all of the beautiful art and designs, inspired me and made me feel like I was 3 years old again.

Could this be called a guilty pleasure of mine? Am I really too old for this ride? I actually doubt this very much. I only consider something a guilty pleasure if it’s of poor quality and not deserving of any recognition as something positive. To me, It’s a Small World is a beautiful declaration by Disney that all people are equal, and if we were to open our eyes a bit more, the world would be a happier place. The same goes for anyone on the autism spectrum. Why can’t people open their eyes a bit and see that those with sensory issues or verbal communication difficulties are really not different from them?

“There’s so much that we share, that it’s time we’re aware, it’s a small world after all.”

Follow this journey on Growing Up Autistic.

Image source: Jonnyboyca [Public domain], via Wikimedia Commons

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How The Turks Head Jugglers Helped Me as Someone on the Autism Spectrum

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Growing up as someone on the autism spectrum, I never really fit in anywhere. Rather than joining others in team sports or hanging out at the mall, I’d be out looking for coins with my metal detector or studying sign language. You could definitely say I had some unique interests.

One day, my mom found a catalog for the night school program in my area. It listed some more common classes such as cooking or writing. But she noticed a specific class titled “Juggling? Of Course You Can!” I thought it was so different, so of course I had to try it!

I enjoyed the class immensely. I wasn’t great at juggling, but I really liked the positive attitude of the instructor, Randy. And when he told me that there was a free, local juggling group called The Turks Head Jugglers, I was thrilled!

I showed up to the group’s gym with my own juggling props: stacking cups (not the little ones, but sport-stacking ones). For the first time in my life, I felt like I belonged. Instead of the usual strange looks, I saw smiles. People were interested in what I was doing…and I was interested in the many different props that they were using. From juggling clubs to the diabolo (a kind of yo-yo), to tossing rings and more, there was just so much to try! And the best part was the fact that I could try them all.

Everyone was welcome to ask to try a new prop. Everyone was always so encouraging to each other. We all shared tips and tricks when we could. And newcomers were greeted with enthusiasm. Kids who came rarely got into trouble simply because they were so intrigued with everything they saw. The Turks Head Jugglers really made me feel accepted. I could be myself there.

And although I haven’t had much time for stacking cups or juggling anymore, I still try to head over to the gym for a visit once in a while. Each time I do, I find myself inspired by their encouragement. I feel welcome and accepted. For me, as someone on the autism spectrum, that is an awesome feeling.

If you or someone you know is looking for a group like this, there are lots of ways to find one. See if there is an adult evening school catalog for your area, and look at the classes they offer. You could look at a local college or school district and check out the list of clubs they have. You can also check out your local Department of Recreation. If you are looking specifically for a juggling group, check out this list of clubs by the International Jugglers’ Association. Above all, follow your interests, and don’t forget to have fun!

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When It Feels Like My Child With Autism and I Have Arrived in a ‘New Land’

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I follow a lot of blogs and have noticed they all differ on how they decide to show the world what their lives are like with autism. We all want to spread awareness for autism — I know that for a fact. We want inclusion for our children, we want needed services for our children and we want the same rights for your children and our children.

Still, my child with autism is very young, and I feel like we’ve just arrived in a “new land.”

Parents with older kids or adult children on the spectrum have definitely paved the way for “newbie” parents like myself. I wouldn’t know half of what I know if it weren’t for them. And what I didn’t learn from them, I learned from people with autism themselves.

I can still remember the emotions I felt after getting my child’s diagnosis. I also know what it’s like to want answers from professionals and not get them and to be sent on my way to this new land.

I just want to learn as much as I can, so I can set my child up to one day live alone in this land.

When I got here, I wanted to be accepted and taken in right away. But just like a new kid at school, not everyone accepts you. I get that. It’s OK, but I sure as hell will teach my child that if she wants acceptance in this land, she has to accept all others here, too.

In this land, there are differences of quirks, stims and, most of all, there are differences in opinions. Isn’t that what makes life in this land great?

Our life with autism might not be like your life with autism, but it’s not uncommon to find someone in our community who we can relate to. Whether your child is younger, older, a girl, a boy, or whether you’re a parent, a self-advocate or advocating for a loved one, we all live here!

In this land, your house may be bigger, and you may have more friends at your parties. And if that’s the case, good for you. You’ve done well for yourself.

I’m just sitting here unpacking our stuff, settling in and getting adjusted to our new life in our new land.

Others may also join us and move in here, too, and I’ll make sure to say “hi” and “welcome” as they come on in.

Follow this journey on Melissa’s Facebook page.

Lead photo source: Thinkstock Images

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5 Ways We're Helping Our Child on the Autism Spectrum Prepare for Preschool

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My daughter Laila recently turned 3 years old and has been diagnosed on the autism spectrum all in the same month. There are many changes happening to our household and her life following the diagnosis. The biggest one is that she will be starting a special education preschool program in the fall.

Laila has stayed home with me for the past three years. Together we have had our share of dancing, snacks and Disney princess movies. When I started noticing delays in her development, she entered early intervention through our county’s public school system. She received speech and occupational therapy on a weekly basis at home. School is going to be a big deal, and as excited as I am for her to experience new things, as an parent of a child on the autism spectrum, I can’t help but worry and wonder about so many things.

She is mostly nonverbal, she hasn’t had friends yet and she is not potty-trained. So my fellow parents, I would like to share with you five things my family is doing to prepare her for the start of the school year in the hopes that we can all start a conversation full of ideas, tips and support for all our little ones embarking on this new adventure.

1. Print out a picture of the school.

Laila’s speech therapist printed out a PECS (picture exchange communication system) picture of school for her. She was in a transitional group where she was learning what school was all about, and she carried her PECS card to and from the classroom. Her father and I repeated the word “school” to her over and over again. We still look at the card on a daily basis, and I repeat the sentence “Laila is going to go to school.” I point out school and classrooms on TV shows and in movies, and we have been reading plenty of books about school and preschool. I’m never sure how much she understands, but I know it’s a step in making her more comfortable once the big day arrives.

2. Point out school buses.

A school bus will be picking up my daughter and taking her to and from school. I’ve tried pointing out school buses on the road to her as we see them drive by. My local elementary school holds summer classes, and we will be taking a walk to see the school buses before classes start. I figure, the more comfortable she gets with these new things, the easier the transition will be. At least, that is my hope!

3. Communicate about potty-training.

Potty-training a nonverbal child on the autism spectrum can be tough. Her preschool will help in potty-training. We talk about potty-training, and we try to get her to sit on her potty from time to time, but I don’t pressure her to. It’s all about making her comfortable with the concept of it.

4. Meet the teachers.

I am lucky to live in a county where my daughter’s preschool teachers will be making home visits to our household in order to get to know her better. I want to tell them so much about my daughter and who she is as a human being. They will get a chance to see her in her home environment. I suggest my fellow parents make an effort to attend back-to-school nights or meet-and-greets with the teachers. Even if it’s just introducing yourself on the first day of school, your heart will be set at ease knowing you’ve met the person who is in charge of your child throughout the day.

5. Start a schedule.

This is always easier said than done, but I am going to print out a simple schedule with visual cues so she may get used to following one. Wake-up time, breakfast time, play time, snack time, reading time, etc. Make one that is best for your child’s day at home. She will have to follow a similar one at school, so I figured consistency between school and home will help her the most.

Good luck to everyone, and good luck to our little ones starting this great, new adventure. May this school year be full of growth and learning!

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